The Sumaira Foundation for NMO
The Sumaira Foundation for NMO (TSF) is a Boston based non-profit organization founded in October 2014 by Sumaira Ahmed. Two months after Ahmed was diagnosed with seronegative Neuromyelitis Optica (NMO), she started the foundation with hopes of generating global awareness, fundraising to help find a cure, and creating a community of support for patients and their caregivers.
History and Purpose
Sumaira Ahmed was diagnosed with NMO in the summer of 2014 after losing vision in her right eye. After realizing that not much was known to the general public about NMO, Ahmed founded the nonprofit organization a couple of months after getting diagnosed[1]. The foundation utilizes social media, digital marketing, events, partnerships, and patient stories to raise awareness while bringing the NMO community together and connect with each other through the foundation’s most successful program, Voices of NMO.
Voices of NMO is an online storytelling hub for patients, loved ones, caregivers and clinicians to illustrate their respective journeys with NMO. The purpose of the program is to illuminate the versatility of the disease, provide an outlet to share personal stories, and host a platform to find support within the community. The foundation has managed to connect with and share stories from NMO patients and clinicians from around the world.
Philosophy
TSF’s Mission Statement: Dedicated to generating global awareness of neuromyelitis optica spectrum disorder (NMOSD), fundraising to help find a cure, and creating a community of support for patients + their caregivers.
Vision: To illuminate the darkness of neuromyelitis optica
Ahmed’s founding philosophy was that heightened awareness among the general public will lead to fundraising to support research and development to eventually find a cure.
Voices of NMO
Established in 2014, Voices of NMO is an online story sharing hub where patients, loved ones, and clinicians share their respective journeys with neuromyelitis optica. In January 2018, the foundation launched the first season of the Voices of NMO podcast, and now has 35 published stories.
These stories are written for the intent of illuminating the community not only about the science behind NMO, but how it affects individuals. The symptoms and effects of NMO are varied, and with little information than other diseases, this provides a chance for other patients to get support. The program also provides an educational aspect about what it means to live with NMO, no matter what part of the story they choose to tell.
Events
The foundation’s first success was a brunch and fashion show featuring the BCBGMAXAZRIA 2015 Spring Ready-to-Wear collection.
In March 2016, The Sumaira Foundation for NMO hosted its first annual gala at the Liberty Hotel, Boston. The gala is aimed at educating the public, generating awareness of NMO, and raising money to support the cause and mission.
In September 2017, the foundation held its first Boston-based community event specifically geared towards young patients with neuromyelitis optica, NMO Picnic in the Park, in the Boston Common. NMO patients, families, and physicians gathered together in the park to meet and make connections with others in the community. The Sumaira Foundation has also been expanding where they host events to places like New York.
Since its founding, TSF has raised funds for other organizations and mission-aligned projects, such as the Global NMO Atlas project.
Events:
Sunday FUNDay Brunch & Fashion Show at Row 34, Boston (February 2015)
Light[Up] NMO @ Linked[in] NYC at the Empire State Building, New York (August 2015)
1st NMO Awareness Gala at Liberty Hotel, Boston (March 2016)
1st New England NMO Patient Day at the Joseph B. Martin Conference Center at Harvard Medical School, Boston (December 2016)
2nd NMO Awareness Gala at Mandarin Oriental, Boston (March 2017)
Shop for a Cause with Alice + Olivia, Boston (May 2017)
NMO Picnic in the Park at Boston Common (September 2017)
2nd New England NMO Patient Day at Brigham and Women’s Hospital, Boston (December 2017)
The Chef + The Doctor at Bouley Botanical, New York (January 2018)
3rd NMO Awareness Gala at Mandarin Oriental, Boston (March 2018)
Impact
Where they have donated to: New England NMO Patient Day 2016 + 2017 Foundation for Neurologic Diseases at the Ann Romney MS Center at Brigham and Women’s Hospital Global NMO Atlas Project at Massachusetts General Hospital
Partnerships
The Sumaira Foundation has received support from organizations such as Shake Shack, Alice + Olivia, Barre Groove, Icons Boutique, and a variety of restaurants in the greater Boston area. The support ranges from donations, event sponsorships, to monetary support. Partners HealthCare, Concord Wealth Management, LaRosa & Bille PC, and Boston Eye Group / Boston Laser are among some of the corporate sponsors for the foundation’s annual gala.
In 2018, TSF became a participating organization of Charity Charge, a credit card designed to support nonprofit organizations.
Press & Publications
2018 NMO Awareness Gala - The Improper Bostonian 2017 Meet Sumaira Ahmed of The Sumaira Foundation for NMO - Boston Voyager 2017 First-Ever Boston Event to Form Network for NMO Patients - Citybizlist 2017 The Sumaira Foundation’s 2nd Annual NMO Awareness Gala - Socially Superlative 2016 What is NMO? - Vibrant Gene 2015 Miss Bangladesh USA Seeks to Raise Awareness of a Rare Disease - India.com 2014 Local Woman Launches Nonprofit for Autoimmune Disease - Boston Magazine
Similar Organizations
The Sumaira Foundation for NMO is one of a few NMO-related non profit organizations in the world. The list below is related to other organizations’ and their support for NMO awareness and research.
Guthy-Jackson Charitable Organization NMO Spectrum-UK Connor B. Judge Foundation
About the Founder
Ahmed was born in Jersey City, New Jersey to Bangladeshi immigrants to the United States. Her family soon moved to Marlboro Township, New Jersey, where she and her two sisters grew up, and she graduated from Marlboro High School in 2007.
Ahmed earned an undergraduate degree in public relations from Boston University College of Communication in 2010. In the same year, she launched her lifestyle blog, Flower: The Converted Bostonian. In 2018. She earned a certificate in Nonprofit Management & Leadership from Boston University Questrom School of Business.
Ahmed began her career as a child working as an actress / model in Bangladesh and India having starred in music videos, an AIDS-related documentary, and was the lead actress in an English-language independent film, Humble River. She is a trained Kathak dancer and has performed nationally and internationally including at Madison Square Garden, Santiniketan, Dolby Theatre, and the Rudolf Steiner Theatre.
In August 2014, Ahmed was diagnosed with sero-negative neuromyelitis optica / CRION. In October 2014, Ahmed established the foundation with hopes of educating the world about neuromyelitis optica while fundraising to support efforts being made towards finding a cure.
In 2015, Ahmed became the 1st Miss Bangladesh-USA. Her social platform advocated for equal opportunity education for the children of Bangladesh in efforts to increase tolerance and strength the country’s economy, infrastructure, and international presence.
References[edit]
- ↑ Ransohoff, Richard M. (January 24, 2012). "Illuminating neuromyelitis optica pathogenesis". Proceedings of the National Academy of Sciences of the United States of America Vol. 109, No. 4. Vol. 109 (No. 4): 1001–1002. Retrieved 22 June 2018.
Ransohoff, Richard M. “Illuminating Neuromyelitis Optica Pathogenesis.” Proceedings of the National Academy of Sciences of the United States of America, vol. 109, no. 4, 2012, pp. 1001–1002. JSTOR, JSTOR, www.jstor.org/stable/41477185.
Cohen, Adam B, and Matt T Bianchi. “COMMENTARY: Neurological Perspective.” BMJ: British Medical Journal, vol. 339, no. 7734, 2009, pp. 1376–1376. JSTOR, JSTOR, www.jstor.org/stable/25673485.
“Neuromyelitis Optica.” The British Medical Journal, vol. 2, no. 3894, 1935, pp. 348–349., www.jstor.org/stable/25345230.
This article "The Sumaira Foundation for NMO" is from Wikipedia. The list of its authors can be seen in its historical and/or the page Edithistory:The Sumaira Foundation for NMO. Articles copied from Draft Namespace on Wikipedia could be seen on the Draft Namespace of Wikipedia and not main one.
